Capturing our Autism Journey

It’s that time of year– a time of reflection, remembrance, sentimental moments, and hopefully family and friends. It’s a busy time of year, and so much can be lost in the hustle and bustle. Hopefully, we find moments to steal away, to capture in our heart, and lock in our memory. As I’m contemplating the season of thanks and giving, I feel compelled to send a letter of thanks to you—to all of you.

Thank you for following along our journey, for your words of encouragement, your questions, answers, laughs, and your continual support. Each of one you have given me community, a place to share, a sounding board, have shown so much love for my son, and to me.

I hope along the way, we have offered some of the same to you. Thank you for being here, for ‘getting’ us, and sharing your experiences here. It’s been an amazing gift.

I hope you find time this season to slow down, capture the sweet moments, make some lovely memories, and to be with the people you love.

It’s that time of year– a time of reflection, remembrance, sentimental moments, and hopefully family and friends. It’s a busy time of year, and so much can be lost in the hustle and bustle. Hopefully, we find moments to steal away, to capture in our heart, and lock in our memory.

As I was contemplating the season of thanks and giving, I was reminded of so many people who have touched my life, my son’s life—who have impacted us and gone farther with us, for us, than most. There are so many people who’ve come into our lives along our journey through autism– doctors, teachers, therapists, and support staff. Each person touching our life in a different way, adding to our experience, guiding us, adjusting our learning curve, and offering support. There have been many wonderful people, and it would be hard to name them all. But, I attempted to make a list. As I was making an unedited list, adding name after name, I noticed one person’s name appeared multiple times. I suppose it was because as my mind rolled through our journey her name kept reappearing. I felt compelled to share her with you.

It’s taken me a long time to write this, to digest the emotions, to find the words. Having children is a blessing—a challenging, life changing blessing. Having my son, Liam, has been the most intense, amazing journey I have ever been on, and trust me, I’ve been on some awesome trips. He has inspired me in ways I didn’t know another human being could. Like every other parent, the love I have for my son is my driving force. And, like most parents who seek out professionals to help their children, I look for providers who are as passionate and dedicated to their work and clients as I am to my son. We have been blessed with some amazing support along the way.

Last year, I was in a battle for services for my son. He needed a specific kind of therapy, and his school district would not cover the expense. Our private insurance denied coverage. It seemed like there were road blocks and barriers at every turn. The fight for services, coupled with daily life, took a huge mental and emotional toll on me. It’s difficult to know your child needs something, and not be able to provide it. It was a dark time, and I wasn’t always sure how things would turn out. I kept pushing. That’s not a pat on my back. I kept pushing because one person continued to make it possible—my son’s BCBA and owner of his therapy center.

Even now, I’m not sure she realizes the impact she has had on my son, my family, on me. I’m not sure I’ll be able to fit it all in one entry. Her passion and abilities as a therapist gave Liam a skill set he did not have before. For the first time ever, he was happy to go to school, happy to engage, and we saw a decrease in behaviors which had limited him for so long. As a mom, it’s hard to see your child struggle in almost every aspect of life. The flip of that is it’s so much sweeter and life changing when you see the same child cross hurdles, and accomplish things he had struggled with for so long. It wouldn’t have happened without Alicia. I’m sure of it. I will forever be thankful.

Not only was she his therapist, she owned the clinic. Liam needed a placement I really could not afford. I was determined to do it, but I didn’t know how. She worked with us, crunching numbers, finding ways to fund his program. There were days I thought, “He’s not going to be able to keep going. We owe too much. She’s a small business. She can’t afford to let us owe this amount of money.” (At one point, thousands, we owed thousands.) I worried about it constantly. There were many sleepless nights and days of fog worrying about paying his therapy bills. I waited for the phone call to tell me he was going to half a day–the call that would end his services. It was a call that never came. She allowed me to pay as much as I could as often as I could, and his services weren’t interrupted. I will be forever thankful.

As if teaching Liam and allowing me a more than generous payment plan weren’t enough, last winter, she read a blog I had written about a failed birthday party. As many of us know, birthday parties for our kids can be a challenge. She offered to help me give Liam a birthday party. I won’t ever forget that. I was pushing a grocery cart, talking to her on the phone, when she said, “I want to help you give Liam a birthday party.” I cried. This person, a therapist, who I had known for such a short time, offered to help me give my boy a birthday party. It was priceless. I’ve yet to write about it, but fully intend too. I’ll save the details. Just know, a group of parents and kids were surrounded by support, the staff from the party location, behavioral therapist, and had a wonderful time—all because of her willingness to help. Another reason to be forever thankful…

When I was looking for a house, she gave me leads. When I was looking for a job, she helped me find one. I could talk all day about what this woman has done for my family, for me. But, for now, I’ll just say thank you, Alicia.

“Thank you for being a smiling face, a warm heart, strength, and forgiveness. Thank you for the impact you’ve had on my son, on my family, on me. You have been an inspiration to me on so many occasions. Honestly, I’m not sure thank you is enough, that it captures what I want to say, or has enough impact. You will always have my gratitude, a place in my heart, and be a memorable part of our autism journey. Thank you for all you have done and continue to do.”

X,

Bec and Liam

To all of you, during this season of thanks, I hope you have people in your life who have impacted you the way Alicia has impacted us. To the providers, teachers, therapists, doctors, and everyone else supporting families—thank you. I hope you know what your dedication and commitment means to the families you work with. Many times, you’re what helps us get through a tough day, and we will be forever thankful.

If you hang around the autism community for any length of time, you’re bound to hear plenty of phrases you’re NOT supposed to say to autism parents. Which begs the question, what do you say? What should you say?

For the longest time, I didn’t have an answer. I didn’t know what I wanted people to say to me when I said, “He has autism.” I didn’t want to hear platitudes. Why do you think I want to be consoled? I don’t. Acknowledged? Yeah, maybe it would be nice to have the statement acknowledged in some way, but what way? Today, it happened. I said, “He has autism,” and she said, “Oh, I’m kind of ignorant to autism. What is that like?”

I was so blown away by her genuine interest, I didn’t have an immediate answer. I smiled nervously and exhaled, “It’s parenting.” I waited a moment, and said, “Every child has their unique set of characteristics and traits. He does too. If you’re asking what autism is…well, it’s a neurological disorder. He’s wired differently. His senses, perception, understanding of the world around him, it’s very different from the average person. What’s it like? It’s a rollercoaster,” I laughed. “But, honestly, it feels very normal to me, now. Of course, that wasn’t always true. It’s amazing what can become your normal…”

“Oh, that’s true. I feel like I was born to be a taxi cab driver. I’m here to cheer from the sidelines. I go to sleep at night hoping their childhood isn’t a smear of a memory– that I’m not messing them up in some monumental fashion… And, if I am, I probably won’t know about it until their twenties. At which time, a therapist will send them to tell me what a piss poor mother I was for all those years,” she laughed. “Is there a cure for autism?”

I flashed an uncontrollable smile, knowing the impact that simple question continues to have on the autism community. “No, there are no known cures for autism. There are a lot of therapies and interventions, which can help people with autism live more productive lives.”

I stood there, soaking up the moment, realizing how unique and comforting it was to find some common ground with a mother whose world (before this moment) appeared drastically different from mine. I found myself holding my breath. It was kind of like being picked first at recess. The excitement of feeling important, included, and part of something. I realized while I was thinking all these things, I was still sort of holding my breath. Maybe, she thought I was thinking of her cure question. She had an inquisitive look, waiting for me to explain further. “It’s so funny you mentioned your endless shuttling. I feel the same. Except, instead of sporting events or conventional activities, I’m shuttling him to therapies. Still cheering, still wondering to what extent I’m screwing up. I console myself with cookies.” And, we laughed some more.

She continued to ask questions, and I inquired about her children. I was awestruck. For a few moments, a mom of typical children and a mom on the spectrum with an autistic son shared a gift, a moment, something similar, and it was priceless to me. To her, it may have been just another conversation, another few minutes of mommy talk, but to me it was a rare occasion, a moment to remember—it was something worth writing about. We talked autism, neurotypical, meltdowns, tantrums, perseveration, common core, exhaustion, and ended it with talk of caffeine addiction. It felt pretty normal, genuine, and she never apologized. She didn’t have sadness for me or my child in her voice. She didn’t give a knowing nod of pity or sympathy. We chatted– two moms waiting in line for coffee. It occurred to me after I left– say this. This is what I want when I tell someone we have autism. Say this.

There will come a point when I have to answer to you, at least on some level, for all of this– how I raised you, the choices I made, the path chosen. I hope you’ll look at me with the same compassion I gave to my parents– two desperately, flawed beings, trying to do the best they could… The reality is you may or may not look on me with compassion, and I will have to accept it, whatever it may be.

I want you to know I did all of this for you, with love, care, and lots of sleepless nights. It’s not easy to raise children. Honestly, before I ever became a mother, before there was even a spark of you, I would joke to others saying, “Some people have great plans for their kids. In this day and age, I just hope my kid doesn’t end up in jail or off on some twisted path of self-destruction.’ I joked about it because I could. Because, I was strangely familiar with my own twisted path of self destruction.

Once you came along and reality set in– parenting in all its glory– I stopped with the bad jokes, and started to really search inwardly for the kind of mother I wanted to be to you and for the kind of man I hoped to raise. I closed my eyes to see you in the future, and envisioned a man comfortable in his own skin, happy, content, loved. That was my dream for you. Sure, there were other, smaller, ideas in my head– baseball, scouts, traveling around, showing you all the wonders I had discovered. I, personally, despite my darkness, have seen such beauty in life. The human spirit never ceases to amaze me, and our ability to come back from anything has been my inspiration for years and years. I wanted to show you that. I wanted to instill a hope and truth in your heart that could not be shaken. So, that’s where I started. That was, and still is, my dream for you.

I don’t know what you think of all this– our life. I don’t know if the choices I’m making today are going to be the right choices even a year from now. There’s so much I don’t know, and because I don’t know I research. I study you — yes son, I spend so much time studying YOU. I’m your mom. It’s one of the things I do. While we’re playing, I’m there with you, laughing, enjoying the person you are, and I’m also assessing. I’m assessing everything: the way you ask me questions, the way you express yourself, play with toys, interact with others, your anger, moods, everything down to your bowel movements. Yes. Those too. One day you may read this and say, “You were paying attention to all of that? I couldn’t tell. I didn’t know.” I don’t want you to know. I want you to be a kid. I never want you to feel like you’re under a microscope. But, yes, I am doing all of that.

I’m also learning as I go, and making tons of mistakes. I’m sorry for those. I’m sorry for forcing you to do things you weren’t ready to do. Oh, yes, some people will say that’s what parents do– they push their kids. Autism is different. Yes, I push you. I also did things out of ignorance that wasn’t pushing you– it was traumatic and unnecessary. I’m sorry for restraining you to brush your teeth, to get haircuts. I’m sorry for holding you down for those doctors. I’m sorry when you screamed for me to save you, and I didn’t. You don’t understand. I had too, right? I had to help them help you, and you wouldn’t do it. You wouldn’t lay there, and let it happen. So, I helped them. I watched you lose trust in me. I watched you hide from me, and it broke my heart. But, in the words of Maya Angelou, “When we know better, we do better.” I stopped restraining you. You brush your teeth. I stopped restraining you, and I cut your hair. I don’t work for the hospital– I don’t help with that anymore either. I had to learn, kiddo. You had to teach me. Boy, did you ever teach me– you have taught me more than I have ever taught you.

So, when you’re looking back, making your own assessments of the choices I made for you, know it wasn’t perfect, nothing ever is….it was just us, together, learning as we go, doing the best we could, and loving one another.

For those of you new to the page, I owe you an apology. You’ve have entered our world, this online journey at a tumultuous time. You missed the potty training days, the time I sipped piss from a cup my child had peed in (thought it was apple juice), when Liam was a pirate, ran naked in a cape most of the day. You missed the fight for services, the humor along the way.

Lately, I am at a standstill with this community (not the page, but the community as a whole), and I struggle to cope with the dissension, the arguing, pretentiousness, self righteousness, and turmoil that rears it’s ugly head in a group of people who should be supporting one another.

I struggle to write. I think, “Maybe today is the day I write the post. Maybe today is the day I ring the bell, and invite every troll in the Western Hemisphere over for a cup of coffee.” My give a shit is long since been gone, and as much as I want to be a positive light– it has to be an honest reflection of this life– life with autism.

We’ve all heard the phrase your autism is your autism, your child’s autism is not my child’s. I’m not sure if some people understand how far that statement reaches. I’m not sure it resonates. The harsh judgements of others, the jokes, and criticisms of fellow parents tells me not everyone understands that autism is a spectrum, and where a child or person falls on that spectrum impacts the decision making and choices for that child’s care, the whole family, mental health, the outlook, and the level of support.

It is easy for some to say, “I embrace my child’s autism. I would not change my child.” And, for others, they simple can not wrap their minds around such logic. As an adult on the spectrum, I can tell you there are days I wish it would go away. There are days I wish I did not have the challenges I have. The thing is, in comparison, and I hate to compare, my struggles could be considered especially mild to so many others. Still, on any given day, to me they’re paramount, and I would give anything to be out of my own head, to be free from anxiety, worry, confusion, obsessiveness, depression, and feeling lost. Having said that, there are days, I feel none of those things, and embrace myself, completely.

I will never understand the wars we wage with one another. Change comes from within. Change. Comes. From. Within. You don’t like Autism Speaks? Do something. And, I don’t mean stand on their front lawn, or knock endlessly on their door screaming about it. You change the infrastructure, you become actively involved in the organization, and help promote an image and dialogue that better suits the community. I use Autism Speaks as an example because its always a hot topic, and it never ceases to amaze me. There are plenty who point and laugh, bitch and moan, but few who move on an action to promote real change.

If this page continues as an autism page, and make no mistake, I am NOT going anywhere, but have entertained a direction change, I have to write exactly what I’m thinking. Yes, the Liam stuff is cute. Yes, he amazes me everyday, and I am proud to be his mother. I am a purposeful person. I have to feel like I am representing our truth, and offering more than just another page about a cute kid. There are lots of cute kids.

Ghandi said be the change. Change to me is promoting productive conversations about issues that matter, not losing our voice fighting amongst ourselves, or using language to berate fellow parents.

Maybe I should talk more about the dark side, the hard parts, the struggle…

I make light of a lot. Partly because I look for the humor, partly out of fear. The truth is like the rest of you, except for the few palm readers we keep around for good measure, I have no clue what the future holds for myself, for my son. In the back of my mind, I’m always thinking about the hard stuff– growing up, independence, adulthood, puberty, relationships, jobs. It’s all swimming around back there. I could white knuckle the steering wheel everyday, waiting, anticipating, worrying. What if it gets bad again? What if it’s worse than before? What if he’s 6’4, and I can’t manage him? I could spend my life there– worrying.

I remember days where my thoughts swirled around one central theme, “I can’t. I can’t do this forever. Will it always be this way? Will he never understand? Is this the rest of his life? My life? Is this autism?”

There were a lot of tears, tantrums (his and mine), sleepless nights, and I just wanted it to go away– whatever it was… Maybe it was autism. Maybe it was the not knowing, the heartbreak, the sadness. I still don’t know what IT was, but I do know IT ruled my days for a long time.

Slowly, I began to reclaim little parts of myself, the truth I knew before autism. What truth? There’s no guarantee I will see my son grown. Any number of things could happen at any given time. To spend my life worrying about things that may never come to pass is a waste of precious time.

I remembered the mother I wanted to be, and while I gave up some of the small battles I thought I would wage– being fully clothed ALL the time, licking the ground, touching garbage cans, you know, shit like that– I remembered the big things I wanted for my child– to be content, comfortable in his skin, happy with himself. While autism presents challenges, those dreams are still present.

I suppose I don’t write about the dark side because I figure you already know about it. Why take you there? I’m certainly not the only parent who has these thoughts. It’s a second job for all of us. Reading some of the comments today broke my heart, made me grateful. I wanted to sit next to you, share that cup of coffee or tea or wine or bourbon in silence, and just exchange energy…

Some days I wish I could go back to when Liam was a baby. Start over, knowing what I know now. We should really get one do over.

That Mr. Potato Head picture….. It was before I knew he was autistic. It was before I knew how serious it all was, how it would impact everything…I didn’t know what I was doing. I knew there was something happening to him, to us. I didn’t know what. I thought it co…uld be autism. But, so many doctor’s told me it wasn’t. “Absolutely not,” they’d say. They were saying absolutely not until three months before he was officially diagnosed.

A Couple of Lessons I’ve Learned Along the Way:

1. Doctors, are humans, and while they spend years in medical school and practicing, they don’t know everything. Follow your gut. Trust your instincts. Learn the difference between recommendations, and THIS is what we have to do.

2. Interventions are meant to be tailored. Don’t buy into the yay and nay. Research and try things for yourself.

3. Learn to laugh. You’re going to need a sense of humor.

4. Dark times will come. I haven’t met a parent yet who hasn’t experienced it. Some of us will have darker times than others. Lot’s of things are involved in that. Each person’s experiences are different, and so are their responses.

5. It will never be perfect. It won’t be. Your best has to be good enough. And, some days? Your best will feel like your worst. What do I mean? Some days it may be all you can do to put one foot in front of the other. But, when you make it to the end of that day, know you took every step. You may not have been running like days before, but you did your best.

7. Don’t get lost in the future. Seriously? How many times do things turn out the way you imagine? Yet, it’s so easy to become fixated on the unknown, planning for situations, and worst case scenarios.

8. Take breaks from autism. Even though you can’t take breaks from your child, take breaks from the research, the hours of online madness. Take time to be where you are, where they are, and then when you’re energy is back– dive back in.

9. Find one friend you can spill everything too– the good, the bad, and the ugly. If you can’t find a friend– start a blog. (BA ha ha ha ha)